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Thought I would just share this. Today we received a letter.....
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
.... from a lovely lady asking for a copy of the newsletter, she is 57 years old she was diagnosed with WG in 2009. She also said that her sister died in 2002 aged 38 yrs of WG, she was diagnosed in 1995. This lady had so many questions she wanted to ask.....Does anyone know of other people who have
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
Wanted Healthy people out there who are willing to take part in Dr Andrew McClean's research project Fatigue in ANCA Associated Vasculitis
They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more people who have vasculitis too, but his main focus at this moment, is getting as many healthy controls as possible. Please message me or send John an
They MUST be healthy (high BP or cholesterol is fine, but no major illness), white British, and as close to 60ish as possible. Andrew still wants more people who have vasculitis too, but his main focus at this moment, is getting as many healthy controls as possible. Please message me or send John an
John_Mills
Vasculitis UK
in
Vasculitis UK
12 years ago
Peninusula Health Technology Commisioning Group Commissioning Decision:- Rituximab for Severe ANCA Associated Vasculitis
The Penisula Health Technology Commissioning Group (PHTCG) has come to a decision on the use of Rituximab for severe ANCA Associated Vasculitis. Rituximab may be offered to patients who have received a Cyclophosphamide-base reigmen for induction of remission and have a major relapse or persistently active
The Penisula Health Technology Commissioning Group (PHTCG) has come to a decision on the use of Rituximab for severe ANCA Associated Vasculitis. Rituximab may be offered to patients who have received a Cyclophosphamide-base reigmen for induction of remission and have a major relapse or persistently active
John_Mills
Vasculitis UK
in
Vasculitis UK
13 years ago
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I have Cerebral Vasculitis, is there a support group in the South England, I see there is one in the SouthWest but this is too far away
milliewin
in
Vasculitis UK
13 years ago
Diabetes in vasculitis sufferers
Having been diagnosed in march 2011 with vasculitis(WG?) and having the cyclo pulses and put on prednisolone, which i'm now down to 5mg, and now a maintenance drug of azathriprine I have now been diagnosed with diabetes. The doc has put me on Metformin 500mg. I'm finding it hard to accept, 1st that I
Having been diagnosed in march 2011 with vasculitis(WG?) and having the cyclo pulses and put on prednisolone, which i'm now down to 5mg, and now a maintenance drug of azathriprine I have now been diagnosed with diabetes. The doc has put me on Metformin 500mg. I'm finding it hard to accept, 1st that I
haze93
in
Vasculitis UK
13 years ago
Anyone else here with Vasculitis related heart conditions ?
Hi everyone, I had a heart attack just over two years ago and luckily the heart consultant had the foresight to drag in a whole raft of other specialists to work out why. Eventually the Rheumatologist diagnosed HUV and began treatment with steroids and immunosuppressants. Initially after the
Hi everyone, I had a heart attack just over two years ago and luckily the heart consultant had the foresight to drag in a whole raft of other specialists to work out why. Eventually the Rheumatologist diagnosed HUV and began treatment with steroids and immunosuppressants. Initially after the
RichardE
Volunteer
in
Vasculitis UK
13 years ago
Has cyclophosphamide followed by azathioprine stopped being used for the treatment of WG?
In reading the recent question 'WG remission experiences', I wondered why nobody mentioned azathioprine - I was given azathioprine after being informed that being given cyclophosphamide long term caused more problems than it solved. Not wanting to show my ignorance, I 'Googled' both azathioprine
In reading the recent question 'WG remission experiences', I wondered why nobody mentioned azathioprine - I was given azathioprine after being informed that being given cyclophosphamide long term caused more problems than it solved. Not wanting to show my ignorance, I 'Googled' both azathioprine
shanat19
in
Vasculitis UK
13 years ago
Hair removal and HSP vasculitis?
I have HSP vasculitis and I find it really hard not to get my rash back whenever I do anything hair removing e.g. shaving, waxing etc.. Does anyone have any tips with this?
I have HSP vasculitis and I find it really hard not to get my rash back whenever I do anything hair removing e.g. shaving, waxing etc.. Does anyone have any tips with this?
krasavica
in
Vasculitis UK
12 years ago
Early days - my story so far
My first ever blog! I was diagnosed with micro polyangiitis vasculitis in early April at the age of 56. Having now joined the support group it has made me appreciate how fortunate I am. The diagnosis was quick enough to ensure my kidneys did not take a serious bashing and they seem to be making some
My first ever blog! I was diagnosed with micro polyangiitis vasculitis in early April at the age of 56. Having now joined the support group it has made me appreciate how fortunate I am. The diagnosis was quick enough to ensure my kidneys did not take a serious bashing and they seem to be making some
Chris-Bromsgrove
in
Vasculitis UK
12 years ago
Marathon blog Number 8
My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's (as well as the Speyside way Ultra-Marathon and other half marathons), raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising
My name is Jamie Flanagan. This year I have ran in the Rome marathon and will be running in the Dundee and Berlin Marathon's (as well as the Speyside way Ultra-Marathon and other half marathons), raising money for Vasculitis UK. I am a Wegener's Granulomatosis patient and am looking forward to raising
jimdrum
in
Vasculitis UK
12 years ago
rituximab and vasculitis.
this next week will be my first dose of rituximab for Anca + vasculitis. several dr's keep mentioning wegeners but still not one will confirm it. I've been diagnosed since july 2010 with Anca + vascultis after 10 months of being told i had arthritis by local Gp, new it wasn't and people say life begins
this next week will be my first dose of rituximab for Anca + vasculitis. several dr's keep mentioning wegeners but still not one will confirm it. I've been diagnosed since july 2010 with Anca + vascultis after 10 months of being told i had arthritis by local Gp, new it wasn't and people say life begins
alan-lee
in
Vasculitis UK
12 years ago
How to cope with a cold?
This may seem trivial but I was wondering what advice anyone has on dealing with being ill on top of the vasculitis. I have my first cold since being diagnosed in Feb '11 with Wegener's, and I feel absolutely dreadful! I know that's par for the course with a cold but I'm worrying anyway. My eyes have
This may seem trivial but I was wondering what advice anyone has on dealing with being ill on top of the vasculitis. I have my first cold since being diagnosed in Feb '11 with Wegener's, and I feel absolutely dreadful! I know that's par for the course with a cold but I'm worrying anyway. My eyes have
EmmaC
in
Vasculitis UK
13 years ago
I have been on 12.5mg methotrexate for 9/10yrs for smouldering Wegener's. Has anyone else been on this for a long time.
I have SOB but x ray on chest is clear and my hair is very thin now. Any comments would be very welcome. Thank you.
I have SOB but x ray on chest is clear and my hair is very thin now. Any comments would be very welcome. Thank you.
Hidden
in
Vasculitis UK
13 years ago
P-ANCA positive can it happen by fluke?
Hello. I was diagnosed as CNSV because of symptoms, a SPECT scan showing reduced blood flow in areas of the brain and a positive P-ANCA. I had chemo and taking mycophanalate. My ANCA is now negative despite ongoing symptoms but I have been told it is now not vasculitis as I'm now ANCA negative. Can a
Hello. I was diagnosed as CNSV because of symptoms, a SPECT scan showing reduced blood flow in areas of the brain and a positive P-ANCA. I had chemo and taking mycophanalate. My ANCA is now negative despite ongoing symptoms but I have been told it is now not vasculitis as I'm now ANCA negative. Can a
KTWells
in
Vasculitis UK
13 years ago
Are there specific genetic risk factors for the different forms of ANCA-associated vasculitis?
There is continuous debate about whether Wegener's granulomatosis (WG), microscopic polyangiitis (MPA) and Churg–Strauss syndrome (CSS) represent one disease entity. http://ard.bmj.com/content/70/4/707.short
There is continuous debate about whether Wegener's granulomatosis (WG), microscopic polyangiitis (MPA) and Churg–Strauss syndrome (CSS) represent one disease entity. http://ard.bmj.com/content/70/4/707.short
Jim-Bornac
in
Vasculitis UK
13 years ago
Has anyone who has been diagnosed with Wegener's for more than five years, ever been diagnosed with a cardiovascular disease?
Hidden
in
Vasculitis UK
13 years ago
Vasculitis Anca
My father has been diagnosed with vasculitis anca in the liver. Has anyone received such a diagnosis? If yes please get in touch with me.
My father has been diagnosed with vasculitis anca in the liver. Has anyone received such a diagnosis? If yes please get in touch with me.
Isabellemt
in
Vasculitis UK
13 years ago
Hello
Hello fellow Lupies, i've just joined this site, found it through FB, I'm 48 years old & was diagnosed six & a half years ago, I have APS & SLE, I was ok ish for the first three & a half years but the last two & a half have been difficult, I've had varoius chest infections, Vasculitis, Pneumonia for
Hello fellow Lupies, i've just joined this site, found it through FB, I'm 48 years old & was diagnosed six & a half years ago, I have APS & SLE, I was ok ish for the first three & a half years but the last two & a half have been difficult, I've had varoius chest infections, Vasculitis, Pneumonia for
Trace
in
LUPUS UK
13 years ago
neurologist's letter
Sorry in advance if this is long winded he has listed the following as diagnoses:- SLE Anti beta 2 glycoprotein antibodies
Cerebral
vasculopathy (probably not
vasculitis
) Muscle contraction headache Diabetes Hypertension Patent foramen ovale (small) In
Sorry in advance if this is long winded he has listed the following as diagnoses:- SLE Anti beta 2 glycoprotein antibodies
Cerebral
vasculopathy (probably not
vasculitis
) Muscle contraction headache Diabetes Hypertension Patent foramen ovale (small) In
annie330
in
LUPUS UK
13 years ago
Plasmapheresis
Please can I ask if anyone has been given this and what your experiences are. When I was first under investigation following TIA and diagnosed with vasculitis and SLE ( the vasculitis is now under dispute with neuro who says vasculopathy) the rheumy I saw wanted to give me this treatment. I
Please can I ask if anyone has been given this and what your experiences are. When I was first under investigation following TIA and diagnosed with vasculitis and SLE ( the vasculitis is now under dispute with neuro who says vasculopathy) the rheumy I saw wanted to give me this treatment. I
annie330
in
LUPUS UK
13 years ago
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